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“I would think it would be much powerful if you use a real case”. (father of hereditary cancer patient P9)

“This (campaign) needs to be very serious, so I guess public promotion cannot be too entertaining. That is, it is
not a plan to entertain the public; it’s just that you want to call for an iconic person (…) so that people will
know about this. But this person must be politically neutral”. (clinical geneticist P14)

Communicating genomics efficaciously: the importance of informational support and literacy
enhancement
In an ideal world, governments would embark on extensive “genomic literacy” campaigns, insisting that
genetic information and related technologies be introduced in the formal curriculum as early as possible. In
reality, promoting the subject is usually left to scientists.

It is expected that in science (like genomic medicine), the speed of innovation and service dramatically
outstrips public awareness and capacity. Specific challenges in genomic education include tailoring complex
topics to diverse audiences ranging from the public and patients of different ages to highly educated
professionals.

All focus group participants (from clinical geneticists to patients and their family members) emphasized one
crucial point that aligns with an imperative the Steering Committee highlighted. To successfully integrate
genomic medicine into mainstream health services in Hong Kong, the genomic literacy of the general public
and the medical field has to be substantially enhanced.

Hereditary cancer patients, rare and undiagnosed disease patients, family members, clinical geneticists, and
medical subspecialists in Hong Kong agreed that genomic medicine is challenging for non-specialists to
understand. A common theme identified from these focus groups is that most participants agree that the
Hong Kong public is not well-equipped to understand the complexity of genomic science. They highlighted
the importance of providing solid informational support by designing simple presentations of clinical
information and genomic materials for various age groups.

“Well, I think the main reason why it (the diagnosis) was delayed, or “wrong”, was due to the lack of genomic
education. Be it to the public or to us doctors, if we are more educated (in genomic medicine), then this will be
improved”. (clinical geneticist P18)

“Even if you ask people who are educated, there aren’t many of them who can tell you what is “Human
Genome Project”. (clinical geneticist P15)

“Honestly speaking, whether it is in Hong Kong or in Mainland China, majority of the doctors have never seen
and have never heard of it (the specific hereditary disease). Well, he/she can’t help, and you can’t blame him/
her”. (rare disease patient P3)

“I need to use a medical dictionary to identify the jargons. I need to spend a lot of time to read and to
understand one journal (one paper) because I have to simultaneously read and look up for the definitions
from the dictionary…” (rare disease patient P5)

DISCUSSION
After months of collaborative and tireless efforts, the launch of the HKGP Pilot Phase adopted the findings
of the present study, focusing on the entire participant’s journey with an emphasis on (1) transparent and